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I was diagnosed with Sjogrens year before last and have since suffered the normal foggy days and ridiculous fatigue etc i was prescribed Hydroxychloroquine but decided not to take it after i experienced side effects.
Anyhow, I was wondering if anyone else experiences the same as me, maybe 2 or 3 times a week i experience an intense aching right down my legs and arms, something i can only compare to intense growing pains.Its really painful but cant think what it could be, added to my tiredness and brain fog/bad memory i do feel older than my 28 years :-( any suggestions most appreciated,
Thanks in advance!
0 likes, 7 replies
aitarg35939 jennifer84972
Posted
Hi Jennifer
Growing up I had terrible leg aches in my lower legs. Not cramps or charley horses but excruciating pain not known to anyone else in my huge family. They continued from earlier than kindergarden into my teens. Am in my 60s now and have that maybe once every 5 - 10 years.
20 years ago I began having very brief excruciating pains in my toes, 5 or 10 seconds. I'd have a number of them and then they'd disappear for a long time. They completely stumped my neurologists.
Over time they've expanded both in area and duration. Though i'm in remission from them now, they sometimes happen in my hands, feet & ankles, sometimes lasting 30-46 seconds. I cry out and can't breathe through these pains, and I am well acquainted with physical pain & breathing through it.
I have small-nerve peripheral neuropathy too (also in remission right now) and the pains are quite different but could be related I suppose. Criminy! I hope the excruciating pain is not an indicator of where the neuropathy will progress.
How long do your pains last?
caroline-ian jennifer84972
Posted
Hi Jennifer
I have also suffered for about 7 years! Was prescribed Hydroxy but again like you decided not to take them! I'm on a high dose of . . Cellcept is the brand! I have pains though not as severe but what has helped me enormously is removing gluten from my diet! I have had so much more energy and feel less pain! Gluten can be a poison to some! Also, I now take Vit D - that has helped a lot but get checked first!
Wish you well!
Tumtum1963 jennifer84972
Posted
Hi - I have this pain too. It comes in blocks - sometimes quite faint but other times it flares up. It's much worse when I'm still/ resting and I describe it as like toothache in my limbs but growing pains works too!
I was misdiagnosed with RA and treated aggressively so I've tried lots of strong drugs and also hydroxichloraquine. All have given me terrible side effects/ allergies until the one I'm on now - Mycophenolate - which I'm tolerating really well. Still got the awful pain though. For me I think it's a non erosive version of RA with tendinitis and small fibre neuropathy.
Mine had previously settled down to nasty numbness and tingle everywhere but has recently flared up again to nights of terrible gnawing toothache pain. I just think it's Sjogrens I'm afraid. Hoping Mycophenolate (Cellcept as they call it in US) works eventually - I've only been taking it for 9 weeks so still time fingers crossed!
brenda25965 jennifer84972
Posted
Hi Jennifer, I know exactly where your coming from,, mine is actually down my left side, aches in my leg and stabbing pains in my arm! I can't take any of the prescribed meds cos of allergic reactions but I've been taking Magnizium for the fatigue and Biotin for skin dryness / rashes and for me anyway it's worked, I can actually get through a day without having to go to bed for a rest and climb the stairs without feeling I've just climbed Everest 🙄 I can, most days when it's bad, keep the pain under control with a combination of paracetamol and ibuprofen alternating every two hours., I've just recently taken up yoga, and though I was very sceptical, I really do think it's helped😊 That's me and we are all different but all we can do is try and stay positive.😊Good luck👍🏻
jennifer84972
Posted
My aches are through my shoulders down my arms to my wrists and through my hips down my legs to my ankles. It seems to start of an evening and lasts sometimes through until the next day and gradually wears off. It makes my arms and legs feel heavy and sore. I suppose it will just be a case of resting when I feel this way but do find it frustrating when I want to do so many things!
Thanks again for your helpful responses :-)
aitarg35939 jennifer84972
Posted
It is a difficult adjustment to make. We hope that you will be fortunate andhave remission of your symptoms.
27 years & 3 weeks ago I had a terrible accident. I went from being someone who'd worked from age 10 onward, paying for school, and very athletic & active plus a big dancing fool, to someone who could barely ambulate across a small room in a semi-upright
aitarg35939
Posted
in a semi-upright position, with no work, no money but very lucky to have friends who took me in. A few years in I realized that the new normal for me was that IF I felt good enough to go somewhere, I also had to knew w that I had the energy to get back. It was a hard realization that suddenly in mid-30s I couldn't count on my body & energy any more.
I am much more mobile now but the emotional part of this is huge: what do we try to fight and what do we accept?How do we grieve for the health and joie de vivre taken from us? Meanwhile, while all that's going on, how do we get a good night's sleep so that maybe, just maybe, we can work tomorrow or go to that movie with a friend?
Just do the best you can each day and find what helps you that day.
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